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Hope for patients in Lyme disease ordeal

FRANCE is to launch a national health campaign against Lyme disease, a bacterial infection caused by tick bites that can be treated easily if diagnosed early but which is often undiagnosed, leading to years of illness with nerve and heart problems.

Health Minister Marisol Touraine revealed the plan after meeting patient groups who have campaigned for better diagnosis and care for sufferers.

The groups have attacked the lack of reliable tests for years as poor diagnosis and a lack of treatment leaves patients with illnesses similar to fibromyalgia or chronic fatigue syndrome.

One patient staged a three-week hunger strike.

Ms Touraine said the new plan will “reinforce prevention, improve diagnosis, improve care for those affected, improve research, and work with campaign groups for treatments”.

Lyme disease is caused by a tick infected with Borrelia bacteria. These attach themselves to people walking through forest or scrubland and bite into the skin. If not spotted and dealt with, they can cause the disease which is characterised by a red rash at the bite and a circular rash around it, like a bull’s eye.

There are thought to be 27,000 people affected by Lyme disease each year but doctors say numbers are vastly under-estimated due to the bacterial tests used.

Those most at risk are walkers  or people who work in green spaces like fields and forests. The infected ticks are most numerous in central France: Poitou-Charentes, Limousin, Auvergne, Rhône-Alpes and Alsace-Lorraine

Prof Christian Perronne, of the Hôpital Raymond-Poincaré near Paris, said: “At the moment the only test available to doctors in France is mainly based on one strain of bacteria from the US but European strains may be different so people are not diagnosed and early diagnosis is vital.

“Sadly, they will get no real help from the health service as it does not recognise the chronic disease if Lyme disease was not previously diagnosed.

“Doctors have even been penalised and forced to stop practising after giving patients what the Assurance Maladie  and the Ordre des Médecins called unauthorised treatment.”

However, Prof Perronne was unconvinced about the project, fearing the consultation would be led by people who did not believe in chronic Lyme disease. He is leading a group of 100 doctors calling on the government to finance research on new tests.

Meanwhile, 250 patients are suing the laboratories that made the ‘Elisa’ tests that failed to diagnose their disease.

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